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I can't believe that NO ONE mentioned, nor has any place on this website warned its members that ANYTHING YOU POST ON ANY PLACE ON THIS SITE IS UNSECURE...WORSE....During a "people search" on LYCOS and GOOGLE and HOTBOT etc....I decided to search for myself....What did I find? all of my postings, as well as the responses to my postings....! As a matter of fact, I entered this site through Google's findings on myself. I am ANGRY that NOT ONE of you "hosts" or members bothered to inform me that my private thoughts, TRUSTED to you-my fellow Pozzies, under the assumption that only others that are registered or part of this site would have access to them, found it necessary to disclose the COMPLETE LACK of security surrounding anything associated with it. Its not that I give a shit who knows....Its more like having your HIV status disclosed to the world by a trusted friend WITHOUT your knowledge. God only knows it was sheer happenstance that I discovered this by complete accident. Just as I would confront a friend that was rude enough to do something like this, I think ITS FUCKING LOW-CLASS, UNDERHANDED, AND A CRYING SHAME that you did not inform me of this situation. I can assure you that I will NO-LONGER feel the same sense of trust...and I will GUARD and EDIT just what I say here from now on. Through your Forum, people I have NOT disclosed my status to, and people looking for access to PRIVATE information...(such as my primary email address, my introduction of myself to you, insurance companies, et all....) now have ACCESS to that data. After posting this message, I plan on deleting as much of myself from this site as I can!!!!!!!!!!!!!!!!!!!!!!!!HOW FUCKING DARE YOU TO ENCOURAGE ME TO TRUST IN THIS SITE AND TELL ME HOW WONDERFUL AND UNDERSTANDING THE PEOPLE HERE ARE. YOU MAKE ME SICK..... Just when I thought I had found a place that I could "let my hair down" and relax.....and express my fears to people that would understand.....I find this, its like a BIG TURD on a birthday cake......I hope you are all proud of yourselves for the cheap laugh you might get out of this.... GOODBYE.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

OOOHHHHHH EXCUSE ME FOR NOT LOOKING TO SEE IF A LITTLE LOCK WAS IN THE LOWER RIGHT PART OF MY SCREEN OR NOT....STUPID ME......HOW SILLY OF ME NOT TO CHECK....GOSH, I GUESS IM JUST A COMPLETE IDIOT FOR TRUSTING SOMEONE....AS FAR AS THE DOOR BEING OPEN........NO FUCKING KIDDING! ITS LIKE THERE IS NO DOOR.....OR WALL.....OR ROOF..... SO DON'T LOOK FOR ME TO RETURN ANYTIME SOON EXCEPT TO WARN NEW PEOPLE THAT IF THEY DON'T LOOK FOR THE LITTLE LOCK, THEY WILL BE IN FOR A NASTY SURPRISE...

JL, I sympathize with how you feel about this issue. Obviously you're very shocked.

As you probably have already noted, many people here do not use photos and do not use their real names. The choice to remain anonymous or not is totally up to each individual. Occasionally a member has expressed some concern about a partner, spouse, employer, etc., "discovering" them here.

Fortunately since we began I can think of only perhaps 2 or 3 instances in which there were problems with a partner or spouse because of postings here and those were quickly settled.

Given your feelings at the moment I'm afraid that may not comfort or satisfy you.

Also, at the risk of stirring your ire up even further, I can't help wondering who you think you would be sussing out your postings. It's an awfully big world on the net and however important your comments maybe to you, on the web they are just some among uncounted trillions.

Thats good advice NADINE.....I plan on it........and to "mr. who pissed in your cornflakes this morning" I'LL TELL YOU WHO PISSED IN MY CORNFLAKES....THIS FORUM PISSED IN MY CORNFLAKES....AND NADINE.....If you can't understand just why I might be SHOCKED and CONFUSED and ANGRY at my discovery.....and the best advice you have to offer is your short, dismissive, "just move on"...comment, perhaps you should consider looking at the amount of understanding you possess....ITS PEOPLE LIKE YOU THAT PEOPLE LIKE ME WANT TO SLAP.......HARD. So do me a favor.....save your hardhearted, cold as an iceberg routine for someone that is on this forum to do malicious damage or to make fun of HIV+ people....and leave those of us that joined IN GOOD FAITH....THAT WERE THANKFUL TO HAVE PERHAPS FOUND A PLACE WHERE WE COULD DEVELOPE FRIENDSHIPS.....ONLY TO DISCOVER WHAT I HAVE AND FEEL A PROFOUND SENSE OF LOSS AS A RESULT....alone. And in case you are wondering, yes.....a couple of tears HAVE ran down my cheeks today because of this....and IF I continue to be a part of this forum(which at this moment I doubt) do me a favor and don't ever say another thing to me.....TRUST ME.....this response is moderated compared to what I am feeling at the moment....and explaining it to you has been an exercise in self control on my part.....Lets just leave it at a mutual "I don't like you..." rather than stoop to utilizing expletives that are beneath both of us.

J -- these are "Community Forums" -- it has always been standard practice on the Internet (from day 1) that "forums" or "discussion groups," and in their earliest forms, "newsgroups,' were open to visitors for viewing (and thus open for search engines to spider).

It has proven to be a very helpful ability for many of us. Even I have found Google search results of AIDSmeds forums threads about subjects I'm doing personal research on (like PMMA for facial lipoatrophy treatment).

For this reason, we will always keep these forums open for all visitors to browse, and all search engines to index.

I'm sorry if you were not aware of this widely known standard practice for "forums," "discussion groups," and "newsgroups."

We do from time to time we do get requests from users to remove personal information from archived posts, and we usually honor those requests (as long as the thread is pretty old, and no longer being posted to). At that point, they pretty quickly disappear from Google, etc.

I can understand how you feel. I used to have my picture up as my avatar until hubby saw and he freaked out. He was also very upset that i used my first name and I have in my profile the state I'm from. I took my pic down and I told him that I'm not the only Teresa in Kansas. He was so afraid that someone he knew might come here and recognize me. Then put 2 and 2 together and find out he was HIV+.

Hubby has yet to use these forums and I know when he does he will not use his real name and certainly not have his pic up. He has yet to disclose to his family or any of his friends. It is all still new to him since hes only known since May.

I hope you stay as there is a wealth of information here and alot of great people.

Well, just as I thought....NO, I did'nt look for the "little lock"......BUT if all you moderators and memebers will just scroll down to the bottom of ANY PAGE....And look at the copyright "Smart and Strong. All rights reserved. terms of use and your privacy" perhaps my anger would be easier to understand......especially the "your privacy" part. Can you now see how my failing to notice the "little lock" might be understandable...and my resulting anger...? Yeah, I know, what are the odds ANYONE would find ANYTHING I say important enough to notice amidst million/billions of emails out on the web to persue....should provide me with some comfort....But my trusting this forum is a slip up I've almost NEVER made....So PARDON my need to CONTROL just what, and to whom I choose to disclose my HIV status to......as well as my email address, my history, my date of birth ad naseaum.......

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I know my bank account has the little "lockie thing" down there "clicked" but never seen it clicked other than that, - my words of total bullshit are for the world to see.... I better get a prettier picture of me if the world is looking. I'm freaked!

I feel silly and stupid....not only for blinding myself to the possibility that use of this site was a public forum....which I should have known....But in my NEED to talk to someone....I just didn't take the time to REALLY check. I am in no way a CLOSET Pozzie...my ENTIRE family knows...as do all of my friends. I was just SHOCKED that the ONLY thing found by "people searching" for myself was THIS forum. NOTHING ELSE....and I've been on the WEB for YEARS..... Its like taking the most vulnerable area of my emotional/private life.....and putting a flashing neon sign up pointing to the area. My HIV status is but one facet of many....just as all of you have many facets that compose your life. I thought that other people that were HIV+/have AIDS would understand.....the need for some degree of privacy....It's bad enough dealing with Insurance Companies....and housing discrimination that can't be proved, as well as dealing with the sheer ignorance most people have in regard to AIDS....and the social stigma imposed upon us by the world at large.....the people that suddenly leave our lives upon finding out that we have AIDS....The relatives that "carefully bleach and wash" everything we touch like dishes, silverware and glasses and toilet seats..... The strained/forced "turn of the head" when hugging us goodbye....The way some people want to wash their hands after shaking ours....the reluctance to either kiss our cheek or allow us to kiss theirs..... THESE are the things that sometimes HURT THE MOST. I've done my best to educate the ones that can be educated....Still....the distance is there. And an inch might as well be 1000 miles.......My continued survival has been the best education, but some of them still look "so surprised" that I'm not already dead and buried. God....I miss my Mom.....she truly understood. Alot of my family avoids me....or ignores me..... Which Is WHY I have withdrawn more into myself.... and reduced the number of people that I trust so openly..... and to have found this forum was a big release for me.......until today.......

We all had the opportunity to choose an "alias" for ourselves when signing up for these forums. (don't follow my advice.... ) What's the point of being upset over something like this? You can easily ask the moderators to delete your Jirv.... account and all the posts associated with it.

You are stressing yourself out for no reason. I, myself, know that anything I disclose here is not "sacred" and WILL be found via any search on the internet. Which is why I CHOSE to change my avatar and replace it with something more generic. And as for my profile...

Whoa, hang on here a minute. Creating a new account is prohibited by the Terms of Membership. Please don't do that. Izzy, please don't advise other members to do things that are against the ToMs. Thanks.

What we can do, is change the screen name of your existing account - all your previous posts will reflect this change. If you wish for this to happen, please send an email to forums@aidsmeds.com

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

JL,Yes, privacy is an important part of all of our lives..poz or not. But, as in any other facet of life, it is YOUR responsability to keep it. You have to think about how you found this site to begin with.....it didn't just magicly appear on your screen like some omen of faith. I know that I read these forums before I joined.

Yes, there are stigmas....unfair treatment....relatives and friends that don't understand....but those are all things we have to rise above in order to move on. I don't think Nadine was being cold. She was being real.

-Jenn

Logged

"I married a German. Every night I dress up as Poland and he invades me. "-Bette Midler

Bailey, it's presumptuous of you to assume you know and can speak for what "most people" are thinking.

Besides that your language is unacceptable in this rant. You need to clean up your act. I have no problem with you having something to say here but calling someone names and cursing at them is neither eloquent nor acceptable.

J, your angry and disappointment is understandable, but , can you just take a deep breath and a step back and look at the situation. You looked into google, you knew what you wanted to find : do you think insurance company , etc ....have enough specifics to pin point what you are bringing forward here for the moment?

Your date of registered was sept 01, do you also just find out about your status recently ??Maybe you should just drop 'silly and stupid' from your vocabulary, we all do , at one time or other, especially when we discovered we have a bug for life !!

You found this site , how?? through google ?? you was alone and needed someone or somewhere to let down your hair, right ?? for all these reasons, this site have to remain public so that whatever ' lost souls ' out there can make their way here.

There are other issues that are fueling your anger, discovery that this site is unsafe is just the cherry on the cake. You just throw your anger here, fine, but then you should also share those issues eating you away so at least we can understand you more. There is love and comfort to be found here but then the security of this site, i am afraid none of us can give you, you need to manage that yourself. You can start by removing your e-mail address if that make you feel better.

This kind of public tirade is both uncalled for and senseless, assuming you are an adult (your profile doesn't give your age, yet oddly your e-mail address remains).

Why berate the administration of this board or its members?

I don't get it. At all. Perhaps you could use a bit of work on adjusting your expectations. Failing that, on adjusting your attitude. If you want to blame someone, blame yourself for assuming anything, and for being so nasty to others for something you created yourself.

Iím not a doctor, but Iíd guess stress is going to kill you before HIV ever does. Try to relax. The support is here. See if you can take a more realistic approach to what you do on the Internet in future.

from reading your messages on this thread I take it that this is not only about security and staying anonymous.

You've expressed a lot more about you and your feelings in this thread alone - after finding out it was public - than you did in all your previous posts. In those you stated that you have been HIV+ for 17 years. You say many people know, because you've told them. Well, I would venture that many more know without you realizing it. Because people are people. And because sharing such bad news as being HIV+ is not only difficult for us, but it is not exactly easy to be on the receiving end either. I know for fact that a couple of people I had confided with eventualy had to tell others because they found it hard to deal with. Not because they wanted to hurt me. The nice thing is that they told me, but not everybody will.

You, like me, found this site BECAUSE it is public. Had I not been able to lurk for a while I would never have signed up. Plain and simple. I am usualy careful, even reserved, with people I don't know, and this is the first internet forum I ever joined. The tradeoff was that I would eventually have to tell about myself a little, take some risks, well, relative ones. So I did not use my real name, and I doubt many people do here (there are a few), and I hid my email address. Then I put my picture up and some times later replaced it with the present one (who looks a bit like me anyway ). I did this because I grew just a tad paranoid, thinking WHAT IFs?? What I am getting at is that there are as many safeguards as possible on this website. Use them (as of now you still have your email address visible...).

I think that the bottom line is that you can not have the cake and eat it, i.e. you cannot participate in a support group, web forum or tell people about your status and be 100% sure that this information will not spread somewhat. It is a risk to take. And quite frankly I think it is worth taking, for here is a place that is pretty unique. If this particular thread has been met with flak it has also been met with understanding and compassion. You've expressed your anger and sense of betrayal with harsh words. Now you have probably calmed down a bit. Do what you need to do to feel safer here. And stay.

Not only can you find emotional support and up to date information here, but you can also contribute to helping others cope with being in a situation you have known for a long time. It is up to you.

They should really get the rules out about this darn Internet thingy!!! I mean its SOOOO new and all.

Seriously if you dont know by now that virtually EVERYTHING you do online no matter WHERE it is, is traceable and findable you need to get Internet for DUMMIES!

Settle down man. It's not like you were JUST diagnosed with HIV or anything. I mean we all have had WORSE news.

Andrew

Logged

LIFE is not a race to the grave with the intention of arriving safelyin a pretty and well-preserved body, but, rather to skid in broadside,thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT ARIDE!!!

OK gang, there's no point in rehashing this over and over again and further sarcastic remarks aren't going to help jirvington feel more at home here. Remember, he came here for information and support, just like the rest of us.

If you have no support to offer j, please close this thread and move on.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I know my bank account has the little "lockie thing" down there "clicked" but never seen it clicked other than that, - my words of total bullshit are for the world to see.... I better get a prettier picture of me if the world is looking. I'm freaked!

Ditto, Eric... I need a new photo... one that shows my pretty side for all the world to see.

As Ann suggested, send the moderators a request to change your username to one less obvious. Remove your email address from your profile or use a disposable, anonymous one from yahoo or hotmail or something. Don't use your real name or email address in posts if you are concerned about confidentiality.

On the old forums this issue came up at least once before and I daresay it will arise again. I can't remember what the AIDSmeds registration process involved but suggest the moderators consider a succinct clarification for those unfamilair with such issues (if such information doesn't yet exist) . Many people, maybe even a majority, know a public site can be indexed by search engines but there are many who don't or who do not realize it during registration. Given the unfortunate, continuing stigma associated with HIV/AIDS in many circles this seems like a reasonable request.

On the other hand, I'm sure the editors don't want to unduly alarm people about security and confidentiality so it's their decision.

BooP.S. My real name isn't Boo. It's Arthur.

Logged

String up every aristocrat!Out with the priests and let them live on their fat!

I think this may involve a little more than someone "googling" you and "finding out."

I've been positive for at least 21 years. At this point, if people don't know I'm a possie, they have blinders on - not to mention ear plugs.

That said, there are times when I have been a bit more candid on these forums than I probably should have. I have exposed myself, my feelings, fears, hopes, etc., for all the world to see.

This, at times, makes me feel more vulnerable. It is kind of like feeling naked in a room full of people.

But in return, I have made good friends here, had wonderful support and, I hope, offered some modicum of support and caring to others.

It is a cost/benefit issue for me. I truly believe it can be for you as well. Yes, I am more exposed than I would like at times. But I also am more free because I really have nothing (or very little) left to hide.

I am also more connected to people here than I ever expected. They have come to mean a great deal to me and are very much a part of my life.

It took time to reach this point. My hope for you, and all others here, that you can reach this level of freedom and comfort and reap the dividends this site has brought my way.

Dang Jirvington, get over it dude! I mean, who's gonna give 2 craps anyhow? I googled my "real" name quite recently, and found the original page on me and my family from AEGIS when I did HIV/AIDS education (including our Family picture).

Your'e really making much ado about nada, and the only thing that I'm upset about is you flaming all over on everyone who has doen so much work on this site! Even tho' I haven't been on this Forum for that long, I do know how much energy and work it takes to maintain and admin stuff like this. And don't you know by now nothing is ever really "secure", especially since there are knuckleheads who have nada better to do but try to hack in sites?

Bottom line dude? If you don't want to see yourself on Google or any other search engine, then don't put yourself out there. Frankly, I think there is more to worry about than someone doing a Google on you, dontcha think?

I can't believe that NO ONE mentioned, nor has any place on this website warned its members that ANYTHING YOU POST ON ANY PLACE ON THIS SITE IS UNSECURE...WORSE....During a "people search" on LYCOS and GOOGLE and HOTBOT etc....I decided to search for myself....What did I find? all of my postings, as well as the responses to my postings....!

Hypothetically speaking, of course, what kind of dumbass uses his real name? Perhaps you might want to change your name to something else. I'm sure that could be done for you. Perhaps something more suitable such as: "Victim-on-aidsmedsdotcom", "Ima Dumbass", or "iHoLDEveRyOneElseAccoUNTaBLe4mYOwNActIOnS" might be an appropriate replacement. If you need help with a name, I'm there for you, man! Just send me an IM. I've already added you to my buddy list!

I can honestly say that when I read J's initial post, I immediately googled my name. I haven't disclosed to anyone I know, nor a family member. I immediately thought that whatever we used to register here (don't remember if my real name was used or not) would appear on Google. Yeah I was freaked. I have nephews and nieces groing up with computers. Of course they'll google whomever they know, just to see. Anyway, nothing came up on google, and I was relieved. Then I came back to finish reading the thread. I was not born in the computer generation, never took a computer lit course, I just wing it. I would have never thought to look for a 'lock' icon somewhere on my screen (I don't see one now, locked or unlocked). I found this place as a link from "POZ" online. So it was not in the back of my mind that people could find me here (they can't because I didn't use my name, nor my town). I'm computer illiterate for the most part.

We saw from J's further posts that alot is going on with him and his emotions. I've seen other threads here where people on meds claim they make them angry, sad, mad as hell, etc... Perhaps J was having a really bad day. How about we give him a break? I hope he does what was suggested to make himself anonymous, and stays here for the support, education and love we're all looking for.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts